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About Me

Hi! My name is Qadoshyah and I'm the oldest of 11 kids. I live on a ranch in the beautiful country of Northeastern Oklahoma with my family. We are a large household with so many kids that we have various projects going on: We raise goats, pigs, sheep, and rabbits (I raise the rabbits - cute little mini lops) on our 44 acre ranch. Our ranch is also home to bullmastiffs, chickens, guinea hens, ducks, llamas, a donkey, a bottle calf, and several ranch dogs and livestock guardian dogs. The youngest two kids are boy/girl twins born in Feb. '05. The boy happens to have Down syndrome. He is such a blessing to our family :)! Our whole family is also gluten-free, which adds another interesting aspect to our large, active family. We also cook dairy-free & corn-free due to allergies a few kids have. Some of the family is also on the GAPS diet to restore gut health.

Disclaimer

The writers of this blog research and attempt to give what they believe is the most accurate and up-to-date information. Nonetheless, the information on this blog is simply opinions and does not in any way constitute professional legal or medical advice. Also, references or links to external, or third party websites, are provided solely for visitors' convenience and are not controlled nor monitered by us. Links taken to other sites are done so at your own risk.

Moreover, this blog and it's writers do not endorse or support religious views that are not consistent with the Bible. The only faith we have found that is faithful to Scripture can be found at www.atruechurch.info.

Friday, November 19, 2010

For some kids, "waking up" the muscles is very beneficial, especially before doing more therapy. With some children it may be rubbing various textures on their skin, some may be massage and others may be vibration.

To help stimulate O's oral muscles before we do speech therapy, we use the Z-Vibe from TalkTools. You can just use your fingers, but since we have the Z-Vibe, that's what we use.

What we do is basically a quick facial massage to help get those muscles ready for some therapy :).

Using either a Z-Vibe or your fingers, press gently and move in small circles from the TMJ (see below) and down to the corners of the mouth. Go a long the bottom of the jaw (see diagram below) and also along the upper part of the cheek. Both to the corners of the mouth. Go around the mouth/lips, doing small circular motions. Then on the lips. With some kids, you may go "inside" the mouth on the inside of he cheeks, but we don't do that.

This is where you want to start the massage.

I drew on this picture the pattern that you want to do with the massage. Starting at each side of the TMJ and working toward midline with both top & bottom.

This will help "wake up" those muscles and also help firm & strengthen them.

I received a comment with a request for a recipe for homemade ranch dressing. Yes, we do have a recipe for it (gluten free, of course!) and I will try to post the recipe soon!

Friday, November 12, 2010

Looking Up left a comment the post I did the other day in regards to potty training. She made a couple good points that I forgot to address, so thought I'd address them here.

I'm in total agreement with you on this issue. There's no point in pushing the potty training issue until a child is ready. Potty training may come later for kids with DS not just because they may be developmentally delayed, but also due to the hypotonia that many kids with DS have to contend with. (This includes the bladder muscles!) The reality is, while they may understand the concept of potty training, their little bodies may just not be capable of doing what we ask them to do at age 2 or 3. Incidentally, I have a friend whose "typical" child is 4, (about to turn 5) & nowhere near potty trained yet. :)

Hypotonia can definitely be a HUGE part in the potty training area. We've seen that with Osiyyah. The first few times we tried to potty train him, he'd go a little pee-pee on the toilet, but 10 minutes later be wet. It was like it would just "drip out" if he hadn't finished going all of his pee. But, he wouldn't necessarily feel that he hadn't gone all of it yet.

We even dealt with that when we started potty training him again this last time around, a few weeks ago. He'd go pee on the toilet, and then say "done!", but we didn't think he was quite done yet. So, we'd tell him to wait a little bit and see if anymore will come out. Sure enough just a few seconds later, he'd pee a lot more! Then he'd truly be done. I

t took a little bit of us making him stop to see if he had really gone all of his pee, before he would really get all of it out every time. Every now and then, he'll still think he's done when he hasn't gone all of it. But, it's not as common as it was when we first started a few weeks ago.

His body, muscles and understanding were definitely ready to learn potty training now.

Wednesday, November 10, 2010

Potty training can be a slower process for some kids with DS. We have worked on it off and on for the last several years. But, we've never pushed the issue, because Osiyyah didn't seem quite ready yet.

We've worked harder at it for probably about the last year. Osiyyah has gotten going poo-poo in the toilet real well and has been good at that for probably the last 6-8 months or so. But, when it came to going pee-pee, it was a lot trickier for him.

So, a few weeks ago, we decided to try him in underwear again and not go back to diapers. He's been doing fantastic. He's had a few accidents here and there, but overall he's been great. I think we're finally done with diapers during the day. He still sleeps with diapers because he'll be dry some mornings, but then wet some mornings.

Osiyyah is 5 1/2 and just now potty trained. We could've pushed the issue when he was younger, but it would not have been easy for him or us. So, we decided to wait and just keep trying. We figured, once he is ready, it will come and be pretty easy for both him and us. And that was the case. It's been very easy to get him potty trained in the last few weeks.

Tuesday, November 9, 2010

Alright, one more mention of the book. I won't keep posting stuff on it, but like I said in another post, I'm working on making it more available for folks for the next few days, so gotta have a post here and there :).

Today, I added a sale to the book....from now until December 10th, you can get 15% off the book by clicking here.

You can also get an additional 10% off by entering the coupon code "TURKEY" at checkout. So, that gives you 25% off the book! Pretty good deal, especially for a 589 page book!

Share with anyone you think may appreciate it.

Also, don't forget to "Like" the book on facebook, since we'll be giving away a free book when we reach 100 "Likes." We're a little over half way there :)!

Someone left a question yesterday on the post regarding Osiyyah's vitamins and what he takes.

HOW do you get him to take this stuff? What do you put it in?

Osiyyah takes his vitamins very easily, because he's been taking it all for so many years now. And he knows he has to take it, so he does it and then just takes a drink afterwards to help wash it down.

The best thing that we've found to mix it in is Apple Butter. It works very well, is a good consistency and seems to mask the taste great. But, most jams, fruit spreads or jellies will work too. Right now we're using homemade Zucchini Marmalade. I know that sounds nasty, but it is actually really good (made with a lot of jello, so you really have no idea it has Zucchini in it!). It mixes pretty well with the vitamins, although it is a bit thinner than Apple Butter.

Over the years we've used quite a few different things....pudding, caramel cream frosting (that worked well too!), natural fruit spreads, apple sauce, and more. But, for us, the apple butter & jams/fruit spreads seem to work the best.

I know some people use it in yogurt. We've never tried that, so not sure how well it would work or not. Others also use it in Smoothies. We don't like to mix it in some big amount of liquid or food, since we want to make sure he gets all the vitamins.

Monday, November 8, 2010

Well, I'm going to take this week and maybe into next week to add more to the availability of our book. Today, I organized LuLu's storefront page for our book a bit more and also made a hardcover copy of the book available!

Yes, the hardcover is a bit more expensive than the paperback, but that's to be expected. A hardcover is $35.50.

I was also able to successfully get the book back out into the online marketplaces with the ISBN number, as we had a bit of an issue for a little bit with being able to buy from other places (like Amazon, etc). Our book will also be available on Google's Book search within about 8 weeks, Lord willing. It will have a 20% preview available.

Stay tuned for more exciting things to come with the book. Don't forget to "Like" it on facebook on the left side of the blog here ;).

1) I think it's obvious why we give this :). Now, I will mention that we use the Microencapsulated powder because it does not taste near as bad as the regular powder.

2) TMG is given to help offset some of the bad effects of the overexpressed CBS gene, which causes decreased folate (due to a folate trap caused by the a messed up SAM cycle).

3) Methylcobalamin B12 is also given because of the overexpressed CBS gene to help normalize elevated MCV levels that can be there (which can mean a B12 deficiency) and help maintain good homocysteine levels.

4) The Nighttime formula is very good to help with growth. It has a couple amino acids in it which help stimulate the release of growth hormone.

2) DHA is extremely beneficial for the neurological concerns and the brain. We give him the strawberry flavored gel caps since they don't taste as bad as plain fish oil caps.

3) Zinc is often times low in people with Down syndrome and Osiyyah happens to be one of those. If he doesn't take 25 extra mgs of zinc a day, his zinc will be borderline low or deficient. That 25mgs of zinc is in addition to the 9 that is already in his dose of Nutrivene-D.

4) Ginkgo Biloba is a GABA antagonist and helps with some of the neurological pathways that need addressing in Down syndrome.

5) Vitamin D is extremely good for the immune system & bone health. It has recently been recommended to give additional Vitamin D, so we do that.

6) Longvida Curcumin is a very helpful antioxidant and has many other benefits for neurons and neurological concerns. We give it in the morning because we've noticed a big difference in Osiyyah compared to when we give it at night (more on that in another post, Lord willing!)

Friday, November 5, 2010

I was corresponding with a mother who has a little boy with Down syndrome this past week and she was asking about different ways that we have advertised our book. She was giving ideas to help us get it out there more and advertise it more, since she has benefited from it so much.

One of the things we talked about was facebook. So, I decided to make a facebook page for it.

You can "Like" it on the left hand side of the blog, or you can click here to go to the page.

I will be adding some new things soon too. We'll be making a hard cover copy of our book available and also offering a special discount for a certain amount of time! Stay tuned :).

When the page gets to 100 "Like's", I'll have a drawing for one person to receive a free book! So, share with your friends and anyone you know who would benefit from this book.

Thursday, November 4, 2010

I received a phone call the other night from a mother, Kim Adams, who follows my blog. It was a nice conversation and I even found out that her son was pictured in the Circle of Friend's book years ago (it was published 12+ years ago). The Circle of Friend's book was a very handy book that had a lot of info in it in regards to TNI and all. Our book is very similar to Circle of Friend's, yet has more new research in it.

Kim has adopted 2 children with Down syndrome. Her son is 16 years old and her daughter is 12 years old. She has also fairly recently started a foundation called Gifts From The Heart Foundation. It is a foundation similar to Make-A-Wish, but only for people with Down syndrome.

Monday, November 1, 2010

Well, it's November 1st, which means the 31 for 21 Blog Challenge is over. It was great to do and I hope y'all learned a lot :). I'll still try to keep the blog updated with a post a day if possible, but may miss a day every so often.

Thought I'd post a message here that I posted on the ES website list regarding the recommended blood work and some explanations for why.

* CBC every 6 months until 6 years of age. (Looking for leukemia)
* T3, T4 and TSH every year for life. (Thyroid testing)
* Atlantoaxial X-rays at 2 years of age especially in active children.
(Looking for atlantoaxial dislocation)
* Metabolic Testing:
o If working through a local lab only: Obtain serum levels of Vitamin A, iron, ferritin, zinc, selenium, and homocysteine, IgA tissue transglutaminase anitbody, endomyseal antibody.

I think the first several are pretty obvious as to why you would get them tested. The other ones though...

Vitamin A - to make sure it isn't too high, since it's a fat soluble vitamin.

Iron & Ferritin to make sure iron levels are good.

Zinc & Selenium to make sure there are no deficiencies.

Homocysteine to make sure it isn't too low. Although this can be a tricky thing to test, because you may not even be able to get it to a good level even though you test. It's so hard and so Dr. L isn't even routinely doing homocysteine testing anymore.